I don’t always know what I’m going to write. I’ve said that before. Today, I suppose I need to write a follow up to my prior post. So many reached out to make sure I’m OK. Yes, I’m OK. Someone said, “You must be in a lot of pain.” No. Not really. It’s more an awareness of reality. It feels a little confusing. I wouldn’t describe it as pain. My favorite came from a text I got where the person thanked me. She wrote, “You are an incredibly brave momma. You really have no idea the type of role model you are to share your soul in such a raw way.”

That’s why I did it. That’s exactly why I pushed through the difficulty of the confession because I think people need to read the rawness of what it’s like to have a child with severe disabilities. What it’s like to hope beyond hope and then to realize you’re not even asking for the things you really hope in the deepest part of your soul will happen. I want people to know the good and the difficult. And trust me, there are extremes of both!

So allow me “part 2” of that post. The why.

I wonder what she’d want to say.

When I realized I wasn’t praying for Catherine, you have to understand what I meant by that. I actually pray with her every night – well, unless she’s asleep when I get home. Sometimes, I even go in and pray with her while she sleeps though. We thank God for five things. This has been my practice since she was born and I’m eternally grateful to the friend who suggested the idea. One day, the best she and I could come up with on our thankful list was that Catherine was warm and dry in her incubator in the NICU on a cold, snowy, gross day shortly after she was born. So, I still do that. And I pray for God’s blessings on her. And I pray for her general well-being. I had stopped praying for anything specific though. And that’s the part that hit me hard.

I want more than anything for her to be able to communicate in some way that others will understand. I want her relatives to have a relationship with her and that seems to require some form of communication. I wasn’t asking God for that because I was – no scratch that – I AM afraid that if it doesn’t happen, it will mean I don’t have enough faith. Somehow I think I’ve twisted things.

God says, “If you have faith as a mustard seed… nothing will be impossible.” If I pray for Catherine to communicate and she doesn’t, then I must not have that much faith. I think about the people who came to see Jesus from all over the holy land believing if they only touched his garments, they’d be healed of their afflictions. There are lots of accounts of healing blind people, dumb (unable to talk) people, people with seizures. Catherine has all of these things. If Jesus were walking around Maple Lawn, would I go touch him on the pant leg (I don’t think he’d be wearing robes!) with the belief he’d heal Catherine?

If I’m honest, I’m not sure I would. First, I wouldn’t think I was worthy. Why heal my daughter rather than someone else’s? Plus, there is a big part of me that thinks I’ve been given Catherine’s life to shepherd so others have a beacon of hope and inspiration – that kind of makes this part of what I’m going through that much tougher. Second, if I touched him and she wasn’t healed, would that say something about my faith? That it wasn’t enough. I’ve always believed God graced me with a good amount of faith. It’s a big reason I’m able to get through many of the challenges we face. If my faith got rocked by asking and not receiving, I really don’t think I could recover from that.

Sure, I know the answer to my prayer might be “No.” And maybe I’m not praying right. I’ve certainly not been fasting and that’s part of this story. I’m not sure if I fast that represents any difference in my faith though. So, I’ve not found a story where the faith was there and the answer was No. Not in the Gospels anyway. Maybe one of you knows a time when there was enough faith and the answer was no. I’d like to read that one.

First of all, the agency got us night coverage and the nurses are showing up and taking good care of Catherine! Our prayers were answered. Whew!

In the light of that, it’s even harder to write what I’ve realized. Funny. Usually my fingers fly across the keyboard as the thoughts roll out of my head through my fingers to the keys which enable words to appear on the screen, and then I post for you to read. Today, as I get ready to write what I want to write – no, that’s not accurate – I don’t want to write it, I think I NEED to write it. Today, my fingers literally stop. Then I decide to change the subject in my head and they move again. Then I think about writing what needs to come out and they simple stop again.

How do I write it? How do I let the world know what I’ve realized with a blinding flash of horror? It’s actually not the world that concerns me. It’s the few people in the world who know me personally and read this blog. Those are the ones that stop my hands, especially those who know me well.

One of the things that has happened since I’ve committed more to writing is that I’ve become more aware of the audience. Of you. I sometimes think of the individuals who I know are reading because they tell me personally about their reaction to what I’ve written. And that’s created a different dynamic. I used to write for me. Now, I find myself writing very much aware of my audience. That’s both good… and hard.

I recently met with an author, Al DeCesaris, who graciously offered to spend time with me talking about how he self-published a book. He’s a really amazing guy who devotes his life to raising funds and awareness for his niece who is affected by Sturge-Weber Syndrome. I told him I wish he’d consider writing his next book about the family dynamic when a kid has disabilities. It’s tough. And that’s all I’ll write about that topic for now because I know they read my blog, and I’m not willing to go there now. Don’t even ask.

I am willing to try to share this big realization though. I just need to figure out how to get it out of my head – my heart and soul really – to my fingers through the keyboard , to the screen and onto my blog.

Dare I do it?

One of the things Al suggested to me was to read Stephen King’s book, On Writing. It is absolutely fantastic. I devoured it! He writes about how the first draft is for the author and the rewrite is for the audience. That’s probably how I shifted from writing for myself to becoming aware of my audience. And as that awareness has grown, it makes it harder for me to write what I feel I need to put out there.

Of course, now that I’ve written all the words you’ve been reading without actually getting to the confession, the confession will probably be a let-down to you, the reader. That’s unfortunate. It’s still a big confession to me even if all this writing in the middle of it has built it up to you so much that when I actually write the words, they will be small in your mind as you receive them.

Trust me – they’re huge to me. And scary. And evidence I’m not the mom a lot of people think I am. So it’s like a double confession – the actual act, which in this case is really an omission of action, and the reality that you’ll see that I’m not the mom you may think I am. And then there is a third layer, too. For this confession has to do with my faith. Again – something that people tell me they admire about me. Yikes! So, the real pain of the confession is that I’ll show you someone who doesn’t live up to your expectations. Well, I’m simply going to let that go.

I was taught by my abundantly creative mom what it really means to have faith as a mustard seed. She had the kids in our Sunday School program put a mustard seed in a shrinky dink and melt it into a necklace we could wear around our necks as a reminder that we only needed this much faith. Have you ever looked at a mustard seed? Go to the spice aisle and do it. They’re small, yes. They’re bigger than you think, though! And that leads me to the fourth layer of this confession. I’m not sure I have that much faith. Because if I did, I don’t think I would have stopped writing what I’m trying to tell you.

So there. I’ve confessed all the layers and shown you my underbelly and fear and vulnerability. Well, OK, not really because I haven’t written the words. I’ve written a bunch of words related to this confession. The actual words of the confession haven’t worked onto the keyboard yet. I can tell they’re trying to come out though because my hands are slowing down to type this part. They realize I’ve danced around the confession about as much as I probably can and still have you continue to read.

Like I said, it’s not going to seem so big to you after all this build-up. And maybe that should make it easier for me to write it. Stop. My hands just stopped moving. Clearly it’s not any easier for me to type it. But sometimes you just have to jump – having faith that the net will appear. So, I guess if I write it, maybe that proves I have at least that much faith. Maybe that’s not so bad.

So, here goes…

Stop.

Really? Again? Come on hands. Stretch. Breathe. Just put it out there. It’s not that big of a deal. Just type what your brain has realized.

Oh, right. It’s more than your brain. It’s your heart and soul. That’s true. I think a confession from the soul is probably more authentic anyway. So, just type it. The world will not end. I promise.

Stop.

Geez. Maybe you can think about it like this. Maybe something great will happen if you just put it out there. Maybe someone will pick up the weight and free your soul. Did you ever think about that? Maybe… So push through the stop. Do those things you tell other people to do. Do that thing that scares you. Just keep typing and let it come out without any thought. Your fingers are flying now, let them keep flying.

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…